[Anonymous]

#1039317

Morning Ricki,

Well where to start? I remember when I was first diagnosed and had the same questions. First off go to http://www.ngdf.org (our home page)and download the FAQs. They will answer quite a few of your questions. Second Yes Barbara Bush and President Bush both have Graves’ disease, as do Gail Devers, Corkey Fox, Joe Piscapoe and many others.

The meds will probably not stop the eye progression in their tracks. They go through what they call hot phases where the eye muscles get pulled in various directions due to swelling and scaring. That is why the double vision and such. Once the eyes get out of the hot phase sometime surgery is needed to correct the double vision.

Life is still good Ricki. Most people (about 90%) go on to live perfectly normal lives. We have Graves’ and we still go on to do great things. We just need to pay attention to our bodies and rest when we need to, work hard when we can and learn to wait. Things get better with time we just have to learn to wait.

That was the hardest for me. I wanted the doctor’s to do things right away so I would feel better. They wanted to wait until things calmed down. I had to wait and I hated it. But in the long run I am doing great!!…

I have Graves’ and life is good. We are only a click away.

Jake
On-line Facilitator

[Anonymous]

#1127448

Hi Renee,
I had the radiation therapy and it helped me. I was also on Prednisone at the time and was told that could have helped however they have continued to get better. I finished at Christmas time. I am also looking at surgeory in a little while but the optho I have is going to look at my cat scan that I had in March and will discuss it in May.
They still bother me as far as my sight goes not as bad and not as long either. I wouldn’t return to work yet because of my eye sight .We shall see in May what will happen. I really do not relish the thought of surgeory.
Lou

[Anonymous]

#1127449

Hi, Loubielou:

Thanks for your reply. Say, do you always need decompression after radiation? I assume if your optic nerve isn’t compressed, you don’t need surgery. At this point, my neuro opth says it’s still considered cosmetic because my optic nerves are ok. Although, every 3 months my eyes are changing, still in the active phase. I am very, very hesitant to have surgery done. I understand it can result in many surgeries following. I would like to have my eyelids done, though, to remove those shopping bags. I need a field vision test to determine whether I need radiation. My eye muscles are quite restricted regarding my peripheral vision.

Take care,
Renee

[Anonymous]

#1127450

Hi Renee,
I dont know if you always need the surgery. Im not even sure if Im going to have it. Like you I understand that once you have surgery then it goes to more. I was told by my optho whom does everything Laser etc that once he sees me it will give him another opportunity to see what the radiation has done. My eye movement is way better however I can’t seem to read for any length of time,or quilt like an hour is way max. Im not sure what Im going to do about work,are you working Renee? I really don’t think I can do it,as I work in a bank so alot of reading and computer work . We shall wait and see. What I need is my eye balls put back into my head. He explained that the first surgery could cause double vision then second sergery will be to correct the double vision and the third one will correct the eye lid’s. From what I have read people have had alot of surgery like Jake. I think Im in the cold phase now and my eyes have gone down alot. The swelling used to go from above my eyebrow and I do have those shopping bags the swelling is now from under the brow and really people don’t see it much with my glasses on.
Have you had all the other problems like leg aches the list is to long to start it. Im wondering about the shins as I did ask the question last night and haven’t heard anything. My shins start to ache and burn really bad enough if it was to continue for long I would get someone to take me to hospital It really hurts enough to take my breath away. It doesn’t last long thank goodness .Just wondering. My optho has his own web page I just found out.
I am going to see him in May to see what happens. Don’t worry about the radiation therapy if you have it. It only takes 10 days and the people here were so nice I took them a lemon loaf one day. All Im telling you is it doesn’t hurt. Its hard emotionally big time.
I was finished at christmas.
talk again
Lou

[Anonymous]

#1127451

Reply to Lou,

Thanks for your reply, Lou! And, yes, I work. What a terrible irony to be in a profession where we use our eyes. I work at home for several court reporters, computer transcribing. I’ve been doing it 10 years.

I feel the eye strain much more now than ever, and I just bought a 21-inch monitor and set my font size to larger text. And I use my computer glasses all the time.

I’m just concerned with radiation about it affecting your vision. But, what the heck, It’s been changing around every 3 months. My eye muscles feel real stiff, going into my temples and cheekbones! So my next field visioin test will determine if radiation is next. To tell the truch, I would like to go ahead and do it rather than do nothing and watch my eyes get bigger and bigger. But, again, my optic nerves look ok, and my neuro-opth is conservative and says it’s still just cosmetic. Yeah, but it’s disfiguring.

Anyway, thanks for the info about radiation. I’m also worried that I won’t have a rebound effect making the swelling return even worse? I hope not.

Renee

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